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amy s

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Everything posted by amy s

  1. Hi pandas16. I don't think I've ever responded to one of your posts before, but I have read about you on here over the years. You raise some thought provoking points. Points I don't even like to bring to the front of my brain! However, still very interesting. I have to preface my answer by saying that my dd is doing perfect currently. And she has been for quite some time. Her pandas was a sudden onset type and was very exorcist like and that lasted for about 15 months of time prior to get getting ivig, and then she got better over the next year. She is now turning 10 this month.
  2. Hi Kim! Thank goodness things are turning around! I am so happy for your son and your family. My dd continues to do just fine, perfect as far as I'm concerned. It has been 4 years this month (2007) that she had her exorcist pandas episode which lasted for 15 months until she had her only IVIg (Nov 2008). While we saw huge improvements very early on (days) it took the entire year to continue to see improvement to complete normalicy- (literally all the way until Nov 2009). I hope you will soon find that everything levels out for your son and family. It sounds like we are lucky
  3. Yes, still on antibiotics daily. Something mightly big would have to happen for us to want to risk taking her off them.
  4. Fish oil-- my pandas dd has been taking 1000mg in the morning and 1000mg at night and does great on it. She was 'classic' sudden onset pandas (onset about 4 years ago)- 'exorcist' variety which went untreated for about 14 months- IVIG saved her and we will keep giving her the fish oil forever probably? By the way hello to everyone here! WE are doing great- she is doing awesome. NO ISSUES at all! Wishing everyone great successes kicking this! regards, amy s
  5. My dd had a very severe classic presentation of pandas in the summer of 2007. After reading others mention it on here, I had wondered if the pool made her worse, but on hindsight I really don't think it did (for her). She had IVIg in November of 2008 and has done extremely well since. She has been taking weekly and sometimes twice weekly swimming lessons for the past 2 years and does not have any issues from it whatsoever, but she was pretty much fully recovered after her IVIg. She showers off after her swim lessons and washes her hair with a 'swimmer's' shampoo, but we don't see any chang
  6. First of all, wishing your child (and family!) the very best with the upcoming ivig treatment. It was our experience that a psychiatrist would not prescribe antibiotics. Eventually the pediatrician got on board and now does the prescribing.
  7. Wilma I am so sorry your dd and your family are going through this. I think many of us understand your situation and have also felt that it was an emergency that our child get IVIg. Please hang in there and do whatever you have to do to get the IVIg. I think you will find that when your child has pandas to this extreme, things such as disney world are not possible. I know I used to read this board and hear stories about people taking their pandas child on trips or letting them play sports or go to birthday parties...I could never relate to pandas in that way because my child's pandas was s
  8. Absolutely not. No guilt whatsoever. But then my child eventually HAD to be pulled out for home school and the poor thing was so ill and with very little understanding in the schools..... NOPE..... No feeling of guilt in the slightest. The only people who should feel guilty are those who judged us during her illness. In the scheme of things- Kindergarten is NOTHING. For that matter, missing any grade -- the education will come --- but only if the health is there first. I did feel sad for my child, as far as missing school---> missing the interaction with friends and such. BU
  9. A positive ANA is an indication that there is an autoimmune disease present.
  10. I wanted to say that I hope your son got the test results that will help your son in a treatment plan that works, whatever the results say.

  11. Well, I'm sure there are plenty of people who dispute it but to me Sydenham's is the same, except it's been in more literature and a more accepted diagnosis. The differences are that there are bigger and more adventitious movements with Sydenham's than pandas...but both have adventitious movements. (or I think the going rate is 30% of pandas patients). But to me, it's all the same thing on a spectrum. You will have an easier time of obtaining the care your child needs if diagnsosed with Sydenham's.
  12. fr88 - thank you so much for sharing!!!!
  13. YES. We noticed changes between day 1 and day 2 of IVIg. When you have a very severe case, I think the changes that you see are extreme. However, please know that we continued to see changes for many many months post IVIg. In our case, our dd is doing wonderfully more than 2 years post IVIg and I really hope that your child will as well. Happy Holidays to all! Regards, amy s
  14. Yes, prior to IVIG my dd did something similiar to this.
  15. My dd was exposed to scarlet fever (my ds had it) prior to her explosion of pandas symptoms (I think it was about 8 weeks prior). Also, at the same time she had a sore throat and fever, but did not culture positive so she was not give antibiotics, even though her brother in our household had scarlet fever and was on antibiotics.
  16. Absolutely amazing! What wonderful community support!!! Thank you for what you are doing and I hope your son's IVIG goes perfectly.
  17. Brandy, It's good to hear your update and wishing you and your family the best with the upcoming ivig. Regards, Amy s
  18. Hi folks, I just wanted to post an update about my dd as this month marks a big anniversary for her. November 17 and 18, 2008 she had IVIG and she has done remarkably well. Many of you were here when I was posting on here more frequently but I still check the boards almost daily and think about your children ALL THE TIME. I do not feel that my dd is 'cured'. I am still in fear that any moment bizarre behaviors will come back. But we have been lucky that so far she has only needed the one high dose IVIG (over two days). There have been a few times that I have increased her antibi
  19. Yay!!!! Hugs to you both! Very happy to hear about her Happy Halloween!
  20. All adults in our household will be getting the flu shot.
  21. Great post... I hate that I actually cried when they told me there was not a brain tumor seen in the MRI. (I know that sounds horrible....but...I think many of you might know where I am coming from) I hate...jeez. Really I just hate everything you guys have already written. I think we need a 'what we love' posting.
  22. In the beginning, when I knew my dd had pandas ...I wanted to increase the antibiotics right away when I knew she was around someone with strep. Now, after IVIg I do not increase antibiotics and she has done fine. However, it has been almost 2 years since her IVIg and I believe her immune system is responding much more appropriately. Someone else will probably chime in with some advice for you. What is your child's weight and currently how is your child doing? Best, amy s
  23. Personally, if it were my dd, I would not write a note to get her out of it, based on the info in this post alone. Perhaps if she were in an exacerbation and had sore joints, etc I would? And even then I'm not sure if I would. I guess it would depend on severity of symptoms at the time. But just because my dd didn't like it, I would not write a note. Along with kimballot, I am trying to help my dd get more physically fit after several years of very difficult pandas symptoms, some of which kept her homebound and she got very little exercise.
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